School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
School of Health and Rehabilitation Sciences, University of the Sunshine Coast, Sunshine Coast, Australia.
Dev Med Child Neurol. 2022 Dec;64(12):1547-1555. doi: 10.1111/dmcn.15290. Epub 2022 May 30.
To explore the lived experiences of adolescents with fetal alcohol spectrum disorder (FASD) to understand: the ways in which their challenges influence daily functioning; and the personal assets and external resources that facilitate participation.
Semi-structured interviews were conducted with four adolescents (one identified as non-binary, one male, and two female) with FASD aged 13 to 15 years. A photo elicitation approach facilitated participation, whereby adolescents first took photographs of their daily activities and environments. Photographs were subsequently used to generate discussion during the interviews. Data analysis involved using interpretative phenomenological analysis to generate themes.
Two superordinate themes and three subthemes relating to participants' lived experiences emerged from the interviews: (1) 'anxiety challenges participation' (subthemes [i] 'need for external support'; [ii] 'the power of positive relationships'; and [iii] 'talents and interests facilitate participation') and (2) 'importance of a unique identity'.
Findings illustrated the barriers adolescents experienced regarding their daily functioning and independence. Additionally, incorporating strengths into daily activities appeared to reduce anxiety and improve participation, and adolescents desired for their unique characteristics to be recognized and appreciated. To support adolescents with FASD, service providers should consider incorporating strengths-based approaches and an explicit focus on facilitating the development of positive self-identities.
Anxiety often prevented adolescents' independent participation in social activities, requiring caregiver assistance. Strengths (e.g. talents, positive relationships) facilitated adolescents' participation and reduced their anxiety. Clinicians and researchers should consider strengths-based approaches to interventions targeting participation. Interventions for adolescents with fetal alcohol spectrum disorder could focus on developing a positive self-identity.
探索胎儿酒精谱系障碍（FASD）青少年的生活体验，以了解：他们的挑战如何影响日常功能；以及促进参与的个人资产和外部资源。
对 4 名年龄在 13 至 15 岁之间患有 FASD 的青少年（1 名非二元性别，1 名男性，2 名女性）进行了半结构化访谈。照片启发法促进了参与，青少年首先拍摄了他们的日常活动和环境的照片。随后，照片被用于访谈中的讨论。数据分析采用解释现象学分析生成主题。
访谈中出现了两个与参与者生活体验相关的上级主题和三个子主题：（1）“焦虑挑战参与”（子主题 [i]“需要外部支持”；[ii]“积极关系的力量”；和 [iii]“才能和兴趣促进参与”）和（2）“独特身份的重要性”。
研究结果说明了青少年在日常生活功能和独立性方面所面临的障碍。此外，将优势融入日常活动似乎可以减少焦虑并提高参与度，并且青少年希望他们的独特特征得到认可和欣赏。为了支持患有 FASD 的青少年，服务提供者应考虑采用基于优势的方法，并明确侧重于促进积极自我认同的发展。
焦虑常常阻止青少年独立参与社交活动，需要照顾者的帮助。优势（例如才能、积极的关系）促进了青少年的参与并减轻了他们的焦虑。临床医生和研究人员应考虑将基于优势的方法应用于以参与为目标的干预措施。针对胎儿酒精谱系障碍青少年的干预措施可以集中在发展积极的自我认同上。
